Since getting that diagnosis, Schneider Williams has made it her mission to correct misassumptions about her husband’s death, to educate others about this still relatively little known brain disease, and to find out what her husband endured while he was – unbeknownst to either of them – suffering from LBD. People with LBD tend to experience, among other things, anxiety, memory loss, hallucinations and insomnia, and these symptoms are generally accompanied or followed by Parkinson’s symptoms. Lewy bodies are abnormal clumps of protein that gather in brain cells and are thought to be responsible for 10% to 15% of dementia cases.
Talking to me from her home in Marin County, California, Williams’s widow, Susan Schneider Williams, tells me: “The doctors said to me after the autopsy: ‘Are you surprised that your husband had Lewy bodies throughout his entire brain and brain stem?’ I didn’t even know what Lewy bodies were, but I said: ‘No, I’m not surprised.’ The fact that something had infiltrated every part of my husband’s brain? That made perfect sense.” I couldn’t spark.” It wasn’t until after he died that doctors were able to see that Williams’s worst fears had come true: the autopsy suggested that he had suffered from severe Lewy body dementia (LBD), more commonly referred to in the UK as dementia with Lewy bodies.
Williams replies: “I guess I fear my consciousness becoming, not just dull, but a rock.
In Marina Zenovich’s 2018 HBO documentary about Williams, Come Inside My Mind, we hear an old interview in which he is asked if he has any fears.
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